Honored Kid

Riley Buckholz

Riley Buckholz Kid Photo

Location

Burlington, IL, US

Diagnosis

Brain or spinal cord tumor

Date of Diagnosis

January 2014

Status

Passed away

Treated At

CDH Proton Center Ann & Robert H. Lurie Children's Hospital Central DuPage Hospital

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My Story

Thank you for supporting me and the more than 300,000 kids worldwide who will be diagnosed with cancer this year. By sharing the gifts of your time, talent and money with the St. Baldrick’s Foundation, you're supporting research to give all kids with cancer a better chance for a cure. January 4, 2014, will be forever etched into my memory. We started off getting Riley a physical at his Pediatrician’s office, and then were immediately sent to Sherman Hospital in Elgin for a CT scan (that day was a Saturday, and his CT scan was scheduled to be the following week sometime). We were down a car (Paul and Aidan were at home), so I called my Dad for support. I will never forget those words, “Riley has a brain tumor”. I remember listening to our Pediatrician explaining it to us, and listening to the lovely nurse who was helping, and as soon as they left, my Dad and I just lost it. We could not believe what we had just heard. How could a 4 year old have a brain tumor? We were in complete shock. I remember my Dad asking me, “Do you want to wait a little before you call Paul”? I said, “Absolutely not, he needs to know now”. How do you tell your husband your 4 year old son has a brain tumor? I just told him as soon as he answered. We were told he also had hydrocephalus (water around the brain which was causing pressure and most likely causing his headaches and early morning vomiting). We were informed that a Transport Team from Lurie Children’s Hospital in Chicago was coming to pick us up and that he would be having an emergency MRI and possibly surgery that evening to relieve the pressure from his brain. Unbelievable. How could this be happening? What do you tell your other son about his brother? Aidan was sent to spend the night with his Grandparents (my parents), with little to no explanation. That was probably the longest day of our lives. It took a few days to find out all of the specifics. What was even more heartbreaking, was finding out that he didn’t just have one brain tumor, he in fact, had 3 brain tumors, with more down his spine, and a larger one at the bottom of his spine. Of course you want to hear the doctors say, “Surgery”, but that was not an option. Our 8 day stay felt like an entire month. I could say that 2014 was an awful, terrible, cruel year. Although it was, it was also a miracle. We are so lucky for Lurie Hospital, all of his Nurses, his Doctors, his Surgeons, his Oncologists, our Family, our Friends, our Supporters, and all of the help/donations we received. We are so lucky and blessed that Riley’s Cancer responded to treatment, and for now, he is stable, and for that, we have to be thankful for 2014. Of course, I am happy to say goodbye to 2014, and we are hopeful for 2015, although, we will always live in fear day to day, as unfortunately, Riley’s journey will never really be over. He will continue to have an MRI every 3 months for two years, and will eventually be spaced out, he will continue to have clinic visits with his Oncologists, he continues to be on multiple medications, is still in diapers, cannot stand or walk yet, is still in a wheelchair, is developmentally delayed, and there is always fear of relapse. We have no idea what the future will bring for Riley, but we have faith, are hopeful, and will continue to need everyone’s support and prayers. We kept track of Riley’s Journey through the “Beads of Courage” Program. It allowed us to document every day of his Cancer Year (January-the end of November). You earn a different bead for various reasons. Here is what Riley’s 2014 year was like according to the Beads of Courage Program (plus or minus a few beads): 7 Surgeries, 1 Lumbar Puncture, 31 Days of Radiation, 6 Rounds of Chemotherapy (54 days), 14 Ambulance Rides/ER Visits, 26 Blood Transfusions, 96 Inpatient Days in the Hospital, 60 days with a fever/Neutropenia (low blood counts), 30 Procedures (CT, MRI, Hearing Test), 25 Clinic Visits, 56 Dressing Changes to his Port/Picc Line, 27 days Accessing/De-Accessing his Port, 20 days of skin protectant due to Radiation burns, 104 days on Antibiotics, 188 Pokes, 289 days of TPN Bags (overnight IV nutrition bags), 17 Special Beads for Special Accomplishments, 197 days of Speech, Occupational Therapy, and Physical Therapy (not even including therapy he receives in Kindergarten), 25 bumpy beads (medication and mobility challenges), 1 initial bead for Diagnosis, and 1 bead for End of Treatment. What a year for a 4-5 year old boy! Our sweet boy, Riley, passed away peacefully in the morning of March 19, 2018. He was and will forever be so loved by so many. We are truly thankful for everyone in our lives who helped us through this journey.

The Childhood Cancer Ripple Effect

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